Month: March 2021

No big theme for today so it will just be some random thoughts and updates.

I’m feeling pretty good and in talking to Shirley this morning she says I’m “sounding like your old self”, first time since last Wednesday. BP is starting to look more normal, no dizziness when standing and no fever. The doctor says I’m a typical, doing well Day 5 CAR-T patient. Also, the ICU team has stopped visiting. I take that as a good sign.

I’ve had some emails with my former roommate who was discharged last Saturday and he sent me a link to some nice photos of my former room, and the ward. You can see them here.

Ok, lets talk food. First of all I’ve got to give Princess Margaret props for their delivery. Cold stuff is cold, hot stuff is hot, really hot. For example, soup is about as hot as it is when I take it off the stove at home. I attribute this to their tray and cart system. The tray clearly has two sides with what might be a thermal break in the middle of the tray. When you touch the tray on one side its hot and the other side is stone cold. I’m assuming the cart has a battery heating system for the hot side. Good job. 👍

Accuracy? I’m not so sure. They have a sheet where you can request what you will have for the next day. This morning my breakfast arrived and the nurse says, “It looks a little light would you like me to get a milk for your cereal and a yogurt? (From the ward’s patient pantry next to my room). Ah, yes please. A bit later I mention to the nurse there was no coffee. She immediately offers to run down to the main floor Tim’s for me, such a sweetheart. I thank her and say I’ll be fine and lay down for a quick nap. When I wake up, my daily meds are on the tray and a Tim’s coffee with cream & sugar!

I’m passing all my 4x daily cognitive test and I’m pretty sure I‘m circling clearly the stuff I want but now I’m starting to be extra careful. I always request salt & pepper for every meal, didn’t show up all day today. I’ve asked for the boiled egg when it’s been on the menu. Have not seen one yet.

On the other hand I’ve learned you can “adjust” the menu choices. Chocolate milk is never on the menu. I write it in and it’s always shown up. I may start to push the envelope a bit. 😜

The real night view is quite spectacular compared to the above photo. I’ll see about producing something better.

Not quite the Ritz but I’m happy to be here.

Today is visitor day and Shirley will be arriving around 10:30am with many treats! New clothes, home-made food from the cousins, Thai takeout for dinner and of course her lovely self. 😍

At the 6am vitals check I ask the nurse if she’d get me some towels as I’d like to have a shower. Her response was “Sure, we’ll get a nurse to help you with that a little later this morning”. There may come a day in my life when that will happen. This is not that day!

In fairness they are still a little excited about yesterdays major dizziness / flopping on the bed episode, ancient history. ” In hospital lingo, fainting:”- Added by editor:)

Around 7am I’m in the bathroom, feeling pretty good and I notice some towels on a chair. I think I’ll start with washing my hair in the sink and see how that goes. No problem! The shower stall is right there, complete with a special chair that of course allows you to sit and still wash you “private” parts. 😜 The things you take for granted you so appreciate when you haven’t been able to, for even a short while! I enjoyed letting the hot water pour over me for quite a long time, I didn’t want to get out. But of course I did, with no dizziness, had a shave, got dressed and was totally presentable when my sweetheart arrived.

About that “special chair” in the shower. As I’m sitting there enjoying the nice hot water I suddenly remember the torture scene in the James Bond 2006 Casino Royale. My chair is sort of like that, except I’m not being tortured.

Daniel Craig is the best Bond ever, I’ll be sad to see him go. Can’t wait to see “No Time to Die” if they ever let it out of the can. Release date has been pushed back again until October 8, 2021.

Shortly after Shirley arrives and unpacks all the treats and show me all my new clothes, the nurse informs us that it’s moving day and I’m getting a new room! I was in a two bed room and they needed the space for two people which wasn’t going to happen because I am in isolation because of my cold. So Shirley flips all my stuff onto the bed, and they wheel the bed, the night table loaded with other stuff and my monitoring machine to a private single room with a south west view of downtown Toronto and Lake Ontario. And the internet is faster. The wi-if access point is right in the middle of my room. I’ve seen up to 45Mbps which I think is pretty good for a hospital.

Sometimes it pays to have a little cold.

I know you’ve been waiting for it. Not enough detailed medical info right? This is for you! This morning the Doctor dropped in and said because of the length of time I’ve had a fever (38°C and over, as high as 103F for those who wonder what that is) and probably some other things, my inflammatory markers in my blood work are getting to be an “issue”. As a result she says I’ll be getting Tocilizumab, again a standard thing to deal with the CRS from the CAR-T. The doctor also casually mentions that a single dose is $2,000 which is no big deal at Princess Margaret. Cancer drugs are expensive. Thanks to the marvels of these drugs, a few hours later my temperature is 37.4°C, no more fever.

Interestingly, it’s also used to treat COVID!

So at someone’s instinct (whose name starts with an S and ends with with a Y :), I happened to mention to the doctor yesterday that I had a bit of a cough and runny nose first thing in the morning. He is not concerned but commented that “protocols” would likely kick in. Oh yeah!

First up, another COVID swab, this one deeper than usual if that’s possible. Then I’m on room isolation and not allowed to cross the green curtain (bathroom included). People coming in now need to gown, mask, face shield, glove, pretty much the maximum protection.

Fatigue continues and my temperature is up & down like a rocket ship, mainly up, but a few drops here and there. It’s been as high as 39.3 for brief time.

The new excitement for today is extreme dizziness. During the 8am vitals my lying BP was quite low, so they wanted to do a standing BP. A few seconds in I had to sit down and then I involuntarily laid down on the bed. I’m getting some additional IV fluid, but apparently too much IV fluid is not good for the CAR-T cells. Can you say “more close monitoring”?

On the positive side at about 11am I’m feeling pretty good, sitting up in bed and perhaps I’ll move to the chair for a while for a little excitement. My roommate was just discharged and I’m making a play for the window bed, very exciting.

Oh, yeah I with all the testing about the cough, I have a Rhino Virus (aka common cold). I hardly notice it, but these days it’s keeping me on room isolation. 😕

Late breaking news! They won’t move my bed to the window but because of my ” special status” (I have a cold) the room has been designated as private and it’s all mine!

You’d have to be of a certain vintage to get this reference to the 1965 TV show Lost In Space. I really liked it! Then there was a 2018 re-boot which I also liked but after 2 seasons it seems to have died.

38.1

When your temperature hits 38 they get moderately excited. And at 0:29am that’s what happened.

After a phone consult with the doctor they feel this is one of the CAR-T side effects, Cytokine Release Syndrome (CRS). But, they are not totally sure as it may be an infection. To rule this out they draw several bottle of blood. Two from each of the PICC line lumens and two from a poke in the other arm. Sadly, blood cultures for this take 24-72hours so it’s all likely to be over by the time the results are back.

My temperature came down shortly after but I’m still running in the 37.5-37.9 range. Also, still very tired. I think another day of laying around is likely.

As another little tid bit after all this settled down, the fire alarm went off, “Code Red 15A”, I’m on 15B. That seems a little close. The nurse says some construction work triggered an electrical fire and it was contained rapidly. Other than that, a pretty uneventful night.

Thankful, nothing significant to report today. I slept well last night and we were up at 5m for vital stats, blood work etc. I’m running a bit of a temperature of 37.4 – 37.9 over the last few hours. Nobody is too excited about that but is it goes over 38 for very long there will be some action.

Also, I’m very tired as I’ve been sleeping most of the morning. Cleaning up my room and getting dressed for the day did me in. Quiet times ahead I think.

A bunch of random thoughts about what happened today with my CAR-T infusion.

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As part of the “Confusion Assessment” you are asked to pick a sentence to write using cursive script, something I rarely do thanks to a life long habit of printing due to writing code in the old days. They said to choose a short sentence because you will be writing it a lot over the next couple of weeks. I chose:

I love my wife

I may have mentioned that the UHN has a thing called the myUHN , an online patient portal where you can see all your appointments and test results. Between yesterday’s body swabs, and today’ blood work I had 60 new test results!

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Just prior to the infusion the nurse is setting up the IV with some saline and then some Benadryl and getting me hooked up prior to the infusion. In a very casual and nonchalant way, without a word, she puts this bag on the IV pole.

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This is what it’s all about, the contents of this little bag. “CAR-T cells in approximately 68ml suspension containing 5% DMSO” or up to 200M CAR-T cells.

Shirley asked about the cost to process the cells and it turns out to be $375,000 USD per treatment. That works out to be $5,514.70 USD/ml

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Two people, a man and a women, bring the above bag in its frozen state to my room at 3:30pm. It’s in some special container immersed in liquid nitrogen, very cold.

They warm it up and check several times that it’s my CAR-T cells and that I’m the intended recipient. After that the nurse hangs the bag and the infusion is under way. In under 30 minutes it’s all done.

Everyone is very positive and affirming about me and the probability of the success of the treatment.

The gentleman on the way out stops to talk to us and says he was very “emotional” about our story and journey and stated that he was honoured to be a part of this special moment. It was very touching.

Garry is allowing me to add a few thoughts today rather than just editing for spelling, punctuation, and grammar.

So here goes!

The team that is caring for us asks a bit about us and of course I share how we met and are childhood sweethearts. That we have an amazing family and group of friends supporting and encouraging us and of course many other details. Garry has asked me to be brief so I won’t go into all the details but suffice it to say I felt we heart connected with them.

We shared the previous treatments and expressed our gratitude at having this CAR-T treatment, a wonder of modern medicine, being an option for us and that God would add His supernatural Healing power to the treatment to complete the process.

As the cells began to flow into Garry’s arm I was overcome with such a powerful emotion of thankfulness as I could feel the healing power flow into his body. It felt like I was standing on holy ground. I could sense the loving, powerful , mighty presence of God fill the room.

At that point everyone was quite emotional and of course I was crying, but they were tears of joy and thankfulness.

As Garry mentioned the young man came back in the room after completing all the paperwork and thanked us for sharing our story, that it had been a very emotional and special time for him and that he was honoured to have been part of our journey. That he would remember us and that this was not at all typical.

I also had an opportunity to talk with the woman who appeared to be in charge of the cells and she told me the process went extremely well and she was confident that Garry would respond well to the treatment. She said that our faith was an important part of our journey and that she was praying for Garry as well. We shared much more than that and when I told her that Garry had a blog she asked for the link so she could see a patient’s perspective on going through cancer treatment. She was very encouraging and I felt like I had made a new friend.

Our journey has been long and hard, but through it all we have experienced such incredible love and support from so many of you. And we have also grown in our faith and have seen the goodness and faithfulness of God in so many ways.

I will stop for now as I’m pretty sure Garry will say you need to start your own blog.

Just know, my heart is full to overflow for so many things and we love and appreciate all of you for being there for us.

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Here I am on 15B in the Princess Margaret Hospital.

It’s a pretty small area, a typical hospital room, that I’m sharing with Ernie, my roommate. Sounds like he might be out Friday afternoon and that I might be in for more like 2 weeks which sounds more typical than the 7 day minimum. Who knows, perhaps I’ll be an overachiever.

Lots of questions on how I’m doing, do I have this, that and the other thing? Generally, “no”. Later the Dr says I’m a sought after patient for the nurses because basically other than this one thing, I’m fine. A low maintenance patient and I’m hoping to keep it that way.

Once again there are a multitude of tests. Blood work, chest X-ray, ECG, and a series of swabs of various interesting parts of my body! Apparently, making sure I’m not coming into the hospital with some sort of disease/infection.

At least x-ray was a trip off the ward down to the 3rd floor for a front & side chest x-ray. They let me walk back to the ward on my own! I could have gone AWOL to the Tim’s or something. Security seems lax enough. 😜

It seem like I’ll need to get my head in that game and settle in. It’s only 5:15pm and I’m feeling bored/trapped/stuck and who knows what else. Time seems to have slowed to a crawl. One day at a time, all things are possible.

Today is the last chemotherapy appointment with 4 days to go until infusion.

Some have asked why chemo with CAR-T, good question. It’s called lymphodepleting (LD) chemotherapy.

Lymphodepleting (LD) chemotherapy is given several days (usually 2–14 days) before you receive your CAR T cells, you will return to the hospital or clinic to receive one or more chemotherapy agents. This chemotherapy decreases the number of T cells in your body to make room for the new CAR T cells. This process is called lymphodepletion. The lymphodepleting chemotherapy will be given to you by a nurse or another trained healthcare professional. You will receive these medications through a vein. Fludarabine and cyclophosphamide are usually given daily for 3 days before the CAR T therapy.

From “What is CAR-T therapy” article.

Tomorrow is “moving day” as we transition our accommodations from my cousin Leslie’s in Scarborough to my cousin Kathy’s in Oakville. Thanks so much Leslie for your gracious hospitality, the great meals, the pampering, and the many trips downtown to the hospital.